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» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» What's next?
Sat Apr 14, 2018 4:28 pm by sally_jane

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 4

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 3

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Newbie to the site

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Newbie to the site

Post  Ksa on Sun Jul 30, 2017 12:16 am

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my marriage. My husband has been put on a roller coaster and has tried hard to understand all of this, but I am better, but not cured. I have had so much pain during intercourse, im so uptight anytime the topic comes up and worried about if it will hurt or not, I pretty much err on the side it will.

I struggle to understand why this effects so many of us. I have to use vsnicream soaps, dye free and fragrant free everything and the slightest thing will set me into a dermatitis nightmare for days... then comes the lidocaine. The only thing I can even think of that changed anything about my vagina was my Leep procedure when I had cervical cancer.  Anyways, thanks for letting me rant.

Ksa

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Re: Newbie to the site

Post  Hopeitworks on Fri Aug 04, 2017 6:24 pm

HI KSA,

I am new to this site just like you. I am not new to vulvodynia though.... I have had it for years and I also had a LEEP procedure done. I have been married for 18 years and I dont know how my husband deals with me. All I ever talk about is my v and how I hate it. He is a patient man. 7 days ago I went through with the vestibulectomy and am praying it works. Do any of the creams you are on work? I am so nervous about using anything down there due to side effects. I believe this condition is linked to hormones and nerve endings, but no doctor will listen to me. The reason why I think it is connecting to nerves is because I get burning skin on the front of my thighs for no reason. It feels like I have sunburn. They have to be connected in someway. Have you tried a nerve block? I am going to demand one if the surgery doesnt work.

Hopeitworks

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Re: Newbie to the site

Post  Jan1959 on Mon Jan 29, 2018 2:55 pm

Hi, I am a new Member.

I have had Vulvadynia for 16 years. I saw many Gynaecologists and Professors, I have seen 3 Pain Specialists and used to go to vulval pain clinic.
The Pain clinic signed me off 5yrs ago after telling me, I probably know more about it than they did and I’m taking the only Treatment to control it and there is nothing else anyone can do for me. It’s a Roller Coaster ride, some days it’s Dreadfull and some days not so bad.

I have not worked or had an income in 15yrs due to my Condition.

It ruined the Relationship I was in at the Time and although I have met and Married a Chap since, Sex is a thing of the past.

I am 59 this year and the thought of Old Age with Vulvadynia is worrying....

I have never met or spoke to anyone else who has Vulvadynia and I’m hoping to meet others like me to exchange Views and Tips and generally talk to another Female who actually gets what I’m saying ????

Jan1959

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Re: Newbie to the site

Post  ryn207 on Thu Feb 01, 2018 3:42 am

Hopeitworks- are you using any steroid creams? I know one that I use thins the skin so when my thighs get some on it they hurt and feel really sensitive. That being said I definitely think that vulvodynia is connected to nerves. My dermatologist explained to me that it's kind of like the aftermath of shingles. Everything can "look" fine, but you still feel pain/itching when you shouldn't.

Jan1959- it's so hard to find the right doctors who actually know of conditions like this. I do love this website because it's so hard to find others who know exactly what you're going through. What are some of the treatments that you tried at the clinic?

ryn207

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Re: Newbie to the site

Post  Jan1959 on Thu Feb 01, 2018 9:49 am

Hi Ryn,

I take 50mg Amitrptalyn every night and I sleep 10-12hrs a night as a side effect. When I get a flare up I use Lidocaine Gel 5% it’s the strongest in can get in Uk from Dr.

I never use Soap or Washes of any kind as I try to Avoid BV and Thrush as much as Possible. I’m at that Age where ICU are a Problem and I’m trying out Alkaline Waters at the moment to see if I can de Acid my Urine a bit....

I buy Coconut Oil and I mix it with Pure Dead Sea Salt, which I use as a Scrub to Bath in. Its works well, isnt expensive to do and I mix it fresh every time I Bath.

I have had Vulvadynia so long it’s part of my life and I try to just get on with, it’s not something you can Talk openly about and my Husbands Family just act like there is nothing wrong with me.

I had a Hysterectomy at 29 for Endometriosis and hav3 no Family of my own.

I had a Laparroscopy and they removed my Ovaries and a lot of adhesions after I got Vulvadynia, thinking that was the problem. Didn’t Help.

I also had a miss shaped Bartholins Gland which was Filling up causing internal Cystes. They Drained it 4 times then Removed it. This has left me with Scar Tissue which sometimes Throbs.
They told me that got all the Gland they could find but it Didn’t Help my Vulvadynia.

So I have had 7 Ops in 7 years during the 16 years while I have had Vulvadynia so I appreciate how hard it is for those going under the knife in an effort to try to get Better.

Jan1959

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Re: Newbie to the site

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